"In a VDOP (Vulgar Display Of Power), the CDC announced today (Saturday, about a week before Christmas) that they have selected Dr. Elizabeth Unger as the new Chronic Viral Diseases Branch Chief. While this comes as no surprise to many of us who have been riding this crazy train for a few stops, it is a blatant assertion that the CDC collective-think seems to be that they can continue to call the terms.

Do not for a minute suppose that they are unaware of how unhappy this makes us. Do not believe for a microsecond that they haven’t heard our pleas. They know. They have no intention of capitulation. This has been one of the slickest, high-level, on-going cons in the history of our country. The way the CDC has handled this illness from the moment they appeared in Incline Village has been a masterpiece of manipulation, so well orchestrated and so highly choreographed that it takes my breath away. One almost has to admire the genius, if it weren’t for the genocide.

I’ve been monitoring the reaction to this news across the community. Some of the commentary breaks my heart. The eternal optimism that such a sick community displays is evidence of the human spirit at it’s best. But listen…

Some of us seem to be under the impression that we got Reeves fired, and that we can do it again with Unger if we need to.

Reeves didn’t get fired. Reeves metastasized. His new title is “Senior Advisor for Mental Health Surveillance in the Public Health Surveillance Program Office within the CDC’s Office of Surveillance, Epidemiology, and Laboratory Services.” The “Reeves Empirical” still stands. We are still being slaughtered with Reevesian studies, such as:

I think we could safely consider Dr. Unger to be “Reeves Part Deux”. Beth has explained to us patiently that the Reeves criteria is perfectly fine, we are just not capable of understanding how it’s being used. She is also speaking of the Georgia cohort as if it were relevant, and seeks to even FURTHER broaden the definition by claiming that “it doesn’t pay to be a slave to any one definition”, a stance which enables allowance or refusal of anyone into any cohort on any given day, depending on the desired outcome.

She has noted that she feels “the day of a simple CFS patient versus control situation is probably over and we need to have CFS with a dimensionality…..”

In one exchange at the last CFSAC meeting, Dr. Jason questioned Dr. Unger about her reasoning for not acknowledging biomarkers on the website. When Dr. Unger answered that they don’t publish everything on the website, because they don’t know what the biomarkers mean, Dr. Jason pursued with:

Dr. Jason: “You feel that most people with this illness have some type of personality disorder? This might be suggested by some people looking at some of the CDC publications , and then the issue of dialogue and communications with research and patient communities with yourself…”(she hadn’t been returning phone calls, apparently).

Dr. Unger: “Again, personality is not my area of expertise so ..I will stand by the papers that the CDC has published because we are very careful with what we do. I will say that I have been “acting” therefore it’s different for me to make long range plans or decisions. So if I have been incommunicative its because I have been trying to move the program forward and feel its not necessarily the time for me to be reaching out yet. But its isn’t that I want to avoid people.”

We’ll see what she says now that she’s no longer “acting”. Pun intended.

This is not a matter of someone at the CDC being underqualified to appoint a branch chief. It’s not a matter of the CDC being out of touch with what the community wants. This is a scene from one of the final acts of a very long-running play, a lead-in to the culmination of the cliffhanger. And here’s the spoiler alert: I’d be willing to bet that by this time next year, according to the CDC….

Cort~
To answer your question of where else to go.....I can tell you I'm supporting wholeheartedly what Dr. Montoya is doing at Stanford. He is doing one heck of a lot to understand what is going on in this illness. In some of us (a subset of those with CFS), it really is looking like infectious pathogens and an immune dysfunction are part of the problem. (It's looking like that is my problem...and I haven't been tested for XMRV yet....I've got enough other pathogens to worry about without adding that one in!)

He recently sent out a newsletter detailing what he has accomplished, what he is working on, and what his dreams are. It is a fantastic newsletter. If I could scan it into my computer and attach it to this post, I would, but I'm not very computer literate, and I don't see an easy way to do this. Perhaps later I'll start a new thread on what he is doing, and type up a summary of what the newsletter says.

He is my doctor, and I just saw him a couple of weeks ago. What a great, caring compassionate and self-sacrificing doctor he is. He works very, very hard on our behalf.

So, where to turn. I'd put my eggs in his basket. He's collaborating with a lot of people to figure this out.

Cort~
To answer your question of where else to go.....I can tell you I'm supporting wholeheartedly what Dr. Montoya is doing at Stanford. He is doing one heck of a lot to understand what is going on in this illness. In some of us (a subset of those with CFS), it really is looking like infectious pathogens and an immune dysfunction are part of the problem. (It's looking like that is my problem...and I haven't been tested for XMRV yet....I've got enough other pathogens to worry about without adding that one in!)

He recently sent out a newsletter detailing what he has accomplished, what he is working on, and what his dreams are. It is a fantastic newsletter. If I could scan it into my computer and attach it to this post, I would, but I'm not very computer literate, and I don't see an easy way to do this. Perhaps later I'll start a new thread on what he is doing, and type up a summary of what the newsletter says.

He is my doctor, and I just saw him a couple of weeks ago. What a great, caring compassionate and self-sacrificing doctor he is. He works very, very hard on our behalf.

So, where to turn. I'd put my eggs in his basket. He's collaborating with a lot of people to figure this out.

Best, Timaca

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He sounds really interesting, Timaca - do you think he would object to your emailing him and asking for the text of his newsletter so you can post it on the forums? If it's a free newsletter, perhaps he'd be pleased to be getting the info out to thousands of ME/CFS patients at no cost.

"In a VDOP (Vulgar Display Of Power), the CDC announced today (Saturday, about a week before Christmas) that they have selected Dr. Elizabeth Unger as the new Chronic Viral Diseases Branch Chief. While this comes as no surprise to many of us who have been riding this crazy train for a few stops, it is a blatant assertion that the CDC collective-think seems to be that they can continue to call the terms.

Do not for a minute suppose that they are unaware of how unhappy this makes us. Do not believe for a microsecond that they haven’t heard our pleas. They know. They have no intention of capitulation. This has been one of the slickest, high-level, on-going cons in the history of our country. The way the CDC has handled this illness from the moment they appeared in Incline Village has been a masterpiece of manipulation, so well orchestrated and so highly choreographed that it takes my breath away. One almost has to admire the genius, if it weren’t for the genocide.

I’ve been monitoring the reaction to this news across the community. Some of the commentary breaks my heart. The eternal optimism that such a sick community displays is evidence of the human spirit at it’s best. But listen…

Some of us seem to be under the impression that we got Reeves fired, and that we can do it again with Unger if we need to.

Reeves didn’t get fired. Reeves metastasized. His new title is “Senior Advisor for Mental Health Surveillance in the Public Health Surveillance Program Office within the CDC’s Office of Surveillance, Epidemiology, and Laboratory Services.” The “Reeves Empirical” still stands. We are still being slaughtered with Reevesian studies, such as:

I think we could safely consider Dr. Unger to be “Reeves Part Deux”. Beth has explained to us patiently that the Reeves criteria is perfectly fine, we are just not capable of understanding how it’s being used. She is also speaking of the Georgia cohort as if it were relevant, and seeks to even FURTHER broaden the definition by claiming that “it doesn’t pay to be a slave to any one definition”, a stance which enables allowance or refusal of anyone into any cohort on any given day, depending on the desired outcome.

She has noted that she feels “the day of a simple CFS patient versus control situation is probably over and we need to have CFS with a dimensionality…..”

In one exchange at the last CFSAC meeting, Dr. Jason questioned Dr. Unger about her reasoning for not acknowledging biomarkers on the website. When Dr. Unger answered that they don’t publish everything on the website, because they don’t know what the biomarkers mean, Dr. Jason pursued with:

Dr. Jason: “You feel that most people with this illness have some type of personality disorder? This might be suggested by some people looking at some of the CDC publications , and then the issue of dialogue and communications with research and patient communities with yourself…”(she hadn’t been returning phone calls, apparently).

Dr. Unger: “Again, personality is not my area of expertise so ..I will stand by the papers that the CDC has published because we are very careful with what we do. I will say that I have been “acting” therefore it’s different for me to make long range plans or decisions. So if I have been incommunicative its because I have been trying to move the program forward and feel its not necessarily the time for me to be reaching out yet. But its isn’t that I want to avoid people.”

We’ll see what she says now that she’s no longer “acting”. Pun intended.

This is not a matter of someone at the CDC being underqualified to appoint a branch chief. It’s not a matter of the CDC being out of touch with what the community wants. This is a scene from one of the final acts of a very long-running play, a lead-in to the culmination of the cliffhanger. And here’s the spoiler alert: I’d be willing to bet that by this time next year, according to the CDC….

If you have XMRV-related illness, you DON’T have CFS!

(Is anybody running book on this? I’ll give 10-1 odds. Guaron-TEED!)"

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PLEASE listen to Shannah and Khaly, repeated above so you don't even have to find the post. I too have been monitoring and see that some commentors have experience in this movement and some don't, and their positions are diametrically opposed. Please do your homework, not only in the written positions of Unger/Vernon, et al, but learn about successful movements in general. Sweetness never got anywhere. We know that hundreds of thousands, if not millions, of letters to the CDC have been ignored, so stop doing it. We know that 20 years of trying to reason with the CDC and be their friend has resulted in the papers published this year that Khaly has listed above. So stop trying to reason with them. This is a war and our lives are at stake. Stop reacting and start attacking. And right now, attacking means to make Unger/Monroe uncomfortable, expose them to Congress, get them removed, and let the public know what is going on.

Please consider what others, who have been there, say. We know 25 years of failure, right from the start with Dan Peterson and Cheney. As a group we are changing our tactics, leaving behind the long letters detailing our plight and other energy wasting efforts. The facts are readily available; Unger/Monroe's spots are well documented. ACT UP.

Hi--the news is a real downer, isn't it? But does anyone have any connections to WikiLeaks? Wouldn't it be wonderful if they could turn up some of the behind the scenes memos that must have passed among the top US health bureaucrats in the last year about CFS and the CDC's involvement and the choice of the new director of viral diseases? Chris

Yes she is chief of the CFS program, if anybody other than me had a question about that.... I didn't know the Chronic Viral Diseases Branch was about CFS

DVRD - Chronic Viral Disease Branch
Conducts surveillance and hypothesis-driven clinical studies of chronic fatigue syndrome (CFS); develops novel genomic and proteomic laboratory assays to be used in studies of CFS; develops bioinformatics techniques to elucidate the pathophysiology of CFS and similar medically unexplained illnesses; develops, executes, and evaluates medical and public education programs to decrease morbidity associated with CFS;
conducts laboratory-based epidemiologic studies of human papillomavirus (HPV) infection and cervical cancer to enable effective control and prevention;
conducts research concerning human immune responses to HPV, CFS, and other related unexplained or chronic illnesses; develops, evaluates, and improves reagents/methods for rapid diagnosis of HPV, CFS, and other related unexplained or chronic illnesses; provides epidemiology, molecular biology, bioinformatics, diagnostic serology/virology, and immunology consultation and collaboration to national and international organizations concerning prevention and control of CFS, cervical cancer, and related chronic or medically unexplained illnesses; and provides expert assistance and consultation to national and international investigators and organizations regarding sequelae of viral infections.

Reeves didn’t get fired. Reeves metastasized. His new title is “Senior Advisor for Mental Health Surveillance in the Public Health Surveillance Program Office within the CDC’s Office of Surveillance, Epidemiology, and Laboratory Services.” The “Reeves Empirical” still stands. We are still being slaughtered with Reevesian studies, such as:

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I agree that Unger is not what we wanted but still focusing on Reeves seems backwards to me; Dr. Reeves was fired- he is no longer the head of the CFS program and he will no longer be directing operations; Dr. Unger is now head; as the head of any program does - she will put her own footprint on the program.

Publications with Reeves name will continue to come over the next year. Don't worry about Reeves! He is gone - he is not working at the CFS research program anymore. Focus on Dr. Unger - she is the one in charge now.

I think we could safely consider Dr. Unger to be “Reeves Part Deux”. Beth has explained to us patiently that the Reeves criteria is perfectly fine, we are just not capable of understanding how it’s being used. She is also speaking of the Georgia cohort as if it were relevant,

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I agree - I think that's a logical conclusion...but this

and seeks to even FURTHER broaden the definition by claiming that “it doesn’t pay to be a slave to any one definition”, a stance which enables allowance or refusal of anyone into any cohort on any given day, depending on the desired outcome.

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Stating this “it doesn’t pay to be a slave to any one definition” does not mean she necessarily wants to 'further broaden' the definition or tighten it up. It suggests that she's open to change.

To suggest that she's going to change the definition on any given day is, pardon my French - nuts! She or any other researcher would be quickly thrown out if she acted capriciously like that. The reason everyone does Fukuda is because everyone does Fukuda - not because its a great definition.

In one exchange at the last CFSAC meeting, Dr. Jason questioned Dr. Unger about her reasoning for not acknowledging biomarkers on the website. When Dr. Unger answered that they don’t publish everything on the website, because they don’t know what the biomarkers mean, Dr. Jason pursued with:

Dr. Jason: “You feel that most people with this illness have some type of personality disorder? This might be suggested by some people looking at some of the CDC publications , and then the issue of dialogue and communications with research and patient communities with yourself…”(she hadn’t been returning phone calls, apparently).

Dr. Unger: “Again, personality is not my area of expertise so ..I will stand by the papers that the CDC has published because we are very careful with what we do. I will say that I have been “acting” therefore it’s different for me to make long range plans or decisions. So if I have been incommunicative its because I have been trying to move the program forward and feel its not necessarily the time for me to be reaching out yet. But its isn’t that I want to avoid people.

Click to expand...

”

I felt that was a bit of cop out by her to state personality is not her area of expertise. Nor was it very gratifying to hear that that she's been incommunicative - which was at the heart of Dr. Reeves and the CDC's programs problems.

This is not a matter of someone at the CDC being underqualified to appoint a branch chief. It’s not a matter of the CDC being out of touch with what the community wants. This is a scene from one of the final acts of a very long-running play, a lead-in to the culmination of the cliffhanger. And here’s the spoiler alert: I’d be willing to bet that by this time next year, according to the CDC….

Besides Dr. Unger getting the job - not a surprising choice but certainly not an inspired one - its disappointing that only two people applied, if the report is true. I would think the chance to lead just about any branch would get dozen's of applications.

I don't mind Unger sticking by the agencies publications - I would have been very surprised if she publicly disavowed them while running for the job; that would have been suicide for her, I imagine. That I understand; its what happens next that matters.

Dr. Reeves so dominated the CFS research at the CDC that he was referred to behind his back as 'the dictator'. Dr. Vernon was labeled as a Reeves clone and still is by some people but the research program she has initiated at the CAA is nothing like the CDC's research program - it very much looks like projects the CFS community wants. Dr. Vernon's case shows that we're dealing with individuals with their own viewpoints. Will Dr Unger continue along the same path or will she push it in another direction?

We know very little about her. Her comments to the panel were not inspiring and did not appear indicative of someone who wanted to move the program in a new direction but she was in job application mode then - and its possible they did not reflect her real intentions - which could take quite a while to emerge given that they are, I presume, locked into certain studies and contracts.

Still she could do some 'small' things to signal that change has come; she could call a meeting of CFS researchers to get their input. She could ask the IACFS/ME and CAA for their recommendations. She could make cosmetic changes such as Dennis Mangan is doing - ME/CFS...she could change parts of the website...

Given how upset virtually every part of the community is with the CDC - patients and researchers alike - I would actually expect the kind of leader we want to do things like that. The first thing I would do in a problematic program, if I took it over, would be to give some visible sign that things have changed. The program needs a dynamic leader - some sign of that she is trying to change the image of the CDC over the next couple of weeks would be really welcome. If she doesn't get that that's needed then that's not a great sign...

We know that hundreds of thousands, if not millions, of letters to the CDC have been ignored, so stop doing it.

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I get your angst and I agree that the CDC has been deaf, dumb and blind to the CFS community but I don't think we've been hammering the CDC with hundreds of thousands of letters. How many people talked on the Public Review session for the future of the CDC last year? About 25. How many letters were sent of at the ten year review - the pinnacle of patient concern about the CDC? A couple of thousand maybe....How many people are in the FOrums - a couple of thousand.....We have never sent out hundreds of 100,000's of anything anywhere - and certainly not to the CDC.

I imagine that, except for special events such as the 10-year review - that although we talk about them alot that they get few letters from us at all.......

Hi Sasha~ I have asked permission to post the newsletter. It may take awhile to get a response.....but I will certainly post it if I can.
Best, Timaca

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I have that letter as well. Looking at it I don't why we couldn't post it but I too am trying to get the OK. It is quite inspiring. Its still a very small program but it sounds like its growing and he's making some progress getting the faculty interested. It sounds like there will be some good papers coming out as well.

"Reeves did not metastasize! Reeves got fired - he is no longer the head of the CFS program and he will no longer be directing operations;"

With all due respect Cort, how can you say that Reeves was fired? He may not be the head of the CFS program any more but he certainly was not fired. Reeves was just shuffled within the CDC when it suited their purposes not ours.

"Publications with Reeves name will continue to come over the next year. Don't worry about Reeves! He is gone - he is not working at the CFS research program anymore."

I think it's naive to assume that Reeves cannot continue to do damage to us with his continuing onslaught of papers, as Khaly has pointed out, promoting his psychobabble message.

I think that if Unger were going to prove promising for us, we would have seen some indication, no matter how small, by now.

"Reeves did not metastasize! Reeves got fired - he is no longer the head of the CFS program and he will no longer be directing operations;"

With all due respect Cort, how can you say that Reeves was fired? He may not be the head of the CFS program any more but he certainly was not fired. Reeves was just shuffled within the CDC when it suited their purposes not ours.

"Publications with Reeves name will continue to come over the next year. Don't worry about Reeves! He is gone - he is not working at the CFS research program anymore."

I think it's naive to assume that Reeves cannot continue to do damage to us with his continuing onslaught of papers, as Khaly has pointed out, promoting his psychobabble message.

I think that if Unger were going to prove promising for us, we would have seen some indication, no matter how small, by now.

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I guess its my guess that he was fired. He had stated his intention to be the last man standing with CFS He had just passed through the 10 year review successfully, then when the new admin came in - he was, all of a sudden, gone...Of course I don' t really happened. I think his influence of CFS got a whole lot less, though.

I do agree about his continuing influence, though - I think of the program like an oceanliner (although the CFS program is hardly the size of an oceanliner ) - he has set the program on a certain course and I imagine they will have to maintain that course for awhile; they have projects underway, contracts with Abt.....so they have to play out those projects - so yes Reeves influence and papers with his name on them will continue to be published as long as his projects are in play...

At some point, though, she will have a chance to move the program in the direction she wants...It'l be VERY interesting to see what the first new project under her control is....

I agree with you on the last point - or mostly do - I think if Unger is going to make a real change - that we should see signs of that soon; there are things she can quickly do, I imagine, to signal what her program will be like.....she could list her priorities....she could broadcast a letter to the CFS community or to the CFS researcher community....I can think of lots of things that she could do.

Look at Mangan...he's done alot of little and not so little stuff; he's communicating iwth the patient community. He sat down and talked for an hour with a group of patients after the CFSAC meeting. He's changed the name of the site; he's changing the website, he's brought more Institutes into the Trans NIH Working Group.........he got the CFS WORking Group to show up at the CFSAC meeting....He is a huge change from Dr. Hannah and that was evident very quickly.

This is now Dr. Unger's program...Its all on her! It's her time.....TIme to make her stamp. Will she? She doesn't strike one as a bold leader -we shall see.

Yes, Chris and xrayspex, I've thought about WikiLeaks, too. But then I thought, we've already had Osler's Web, even a new 2006 edition, and we already have the slew of psychobabble publications from Unger and fellow CDC people. We are not short on information; ME/CFS minds just don't seem to be able to comprehend: We already have the track record of Unger, including her current performance at the CFSAC that left no doubt of her intentions. The psychobabble program is the program she helped form and now heads. There is no reason to expect she is going to reverse the last several years of her work. Believe what she says. I know we hate to be confrontational, but in a war, giving the enemy more time, hoping they will come over to your side, guarantees you will be shot.

And Cort, there were many national letter-writing campaigns before you appeared. (We sent thousands just from our local group.) Please, please learn from our experience.

i am too sick to read this whole thread. so if someone wrote this already, my apologies...

our next step should be that we get unger, collins and fauci's public speaking schedules and then we have a loud, obnoxious, shouting presence at each of their public speeches. then a lie-in/die-in, preferably at the foot of their speaking lectern, or, alternatively, as close as possible to the press that is present. others of us must videotape the goings on and post it on youtube immediately afterwards.

Marty, I've been here for over 10 years....Writing articles, imploring for more advocacy - for more people to get involved. So yes, I'm sure you did all those letters etc. but that hasn't happened for quite awhile - nobody you, me or anyone else, has been sending letters en masse to the CDC or anyone else for a long time.

If you can figure out a way to turn the CDC around - god bless you I'm all for it. The same with the NIH.....

I agree that there is no reason right now to expect Dr. Unger to be any different. But Dr. Vernon is VERY DIFFERENT from Dr. Reeves and she came out of that program as well. So while you may very well be right and if I was a betting man I would bet on your take but I disagree that you or we know how she will turn out.

i am too sick to read this whole thread. so if someone wrote this already, my apologies...

our next step should be that we get unger, collins and fauci's public speaking schedules and then we have a loud, obnoxious, shouting presence at each of their public speeches. then a lie-in/die-in, preferably at the foot of their speaking lectern, or, alternatively, as close as possible to the press that is present. others of us must videotape the goings on and post it on youtube immediately afterwards.

i am totally serious.

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As the start of your post shows, I'm not sure we're the group most able to follow through on these sorts of tactics. It's frustrating, but I think we need to be honest about how limited we are.

We already have the track record of Unger, including her current performance at the CFSAC that left no doubt of her intentions. The psychobabble program is the program she helped form and now heads.

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As to this one way to figure this out is to look at her particular research interests. You can't say because she is a co-author on a paper that that paper reflects her interests because the CDC papers tend to include just about everybody.

Looking to see which papers she is the senior or first author would better indicate her interests. While this doesn't indicate which direction she will lead the program in - at least we know what she is interested in....

If you look you'll see that they did not choose a psychologist to lead this program....She has been the senior author of relatively CFS publications; those studies she did oversee were all physiologically based.

She has a much stronger record off of CFS - and here, again, she's interested in cancer, proteome studies, T-cells....